Support | Friendship | Relationships
Update: I am focussed on having a little fun before the summer is over - and have just committed to a classic soft-top sports car .... So - as I spend my time between the Mid Wales hills and Pembrokeshire Coast - with many journies around the UK - maybe might see some of you around .... so if you see a red little Mk 1 Eunos Roadster - [visually like a Mazada MX5 convertible] - poop-poop me three times!
Friends with a positive outlook are fun and enriching - so I try to be likewise ... no matter how challenging our high input focus can be ..... still renovating property and trying to remain practical and focussed!
Work and Play ... fun and focus ... and then some!
I would still like to connect with others who have had a TIES implant - especially with Pete .... for it would be good to see some real positive outcomes from the developement of this device!
It is coming up to three years since I was the First Person to be implanted with the TIES the novel device under clinical trial to offer a no bag illeostomy management.
I am wishing to be in contact with my fellow implantees Three to my knowledge within the UK - and some 8 who had an earlier device implanted in Sweden.
Please network and get in touch - Thank You so much.
The article covering my own implantation is covered on the TIES website.
I have no yet written about my experience up to explant in Sep 2019 and the time to date when in April 2022 I am still awaiting repair surgery!
Generally I do not use social media.
I surfed in here when I was looking up hernia / stoma.
As far as the specifics of folk joining here - I suspect I may have the opportunity to be updated with medical and social information particular to our circumstances.
I have written some stuff following: But in brief I have joined in order to share and help others. That is my intention. I must also say that I will not wallow in negativity and will only try and support others by contributing positively where able to do so.
I note there is no spell-checker facility - or I have missed it - so appols for any such - not my strongest point ;-)
I have been most fortuneate with my medics and surgeons over the years - without whom I would not be alive: However we are all responsible for our own well-being and whilst the medical professional can be wonderful - they can not, nor should ever be expected to be the salvation for our own individual journey on the planet!
I would always say to anyone 'searching' "Believe in Yourself" "Have the confidence to go deep within and then some - and even if one is a person who likes to be in control, be brave and let go - find your ultimate weakness - be with it get to know it and from here you can help, yourself, and others."
Be strong, but be gentle and kind - the rest will follow.
I have had my ileostomy since I was 25, ie over 35 years.
I accept it as being part of me - and like most of us, just occassionally get tired of its management and think it would be so nice to be without it!
I am not a vain person but do find that it impinges on the reality of my body - I am in fact a spiritual person and so it just 'is': But it would be lovely to find others in a similar vane. I do not currently have any Ostomist Friends - but then I do not like such definitions either !
I also had a tough and quite a long physical illness prior to having the collectomy. LArgely as a result of high prolonger stress in isolation as a younger, sensitive, but very independent person. I spent many years on metabolic units and in varying stages of energy and fitness - always working my way to wellness and never giving in - always holding the ideal and never settling for second best.
I also have a chimp to thank for my survival - back in the 70's - having devoted its life to medical research: I must do something very particular to saythank you to our fellow primates.
I have had several close calls and like a cat of nine lives - I have a couple or so left .... and then some!
From being a healthy club tennis player and high energy competitive person I went to someone who could crawl on all fours and barely make a cup of tea for herself: At the age of 17 I was given a prognosis of six months unless a colectomy was done there and then - I had a chrones diagnosis and this was in fact penetrating chrones which affected pretty well all my alimentary tract and also came out on my legs. There followed a series of physicians and second third and fourth opinions along with energy medicine to treat in tandom the dis-ease I was fostering. After further 3 month prognosises, One went into deep line feeding - in order to rest what had become an infected and vulnerable mass of intestines - not a temporary ostomy - but a period of resting the diseased tract with the result of healing from the top down - at the expense finally of the rectum and the large bowl and rectum: But rather than having all the tract removed and ending up with a feed pipe which was being promoted as the option fast becoming my only reality - and never tasting food - one managed to become healed and learned to manage one's journey: Sadly 24 hours prior to my schedulled collectomy surgery when I was strong enough to be operated upon, my large bowel perforated: This resulted in 'gut bugs' travelling thoughout my body and infecting all my major joints - so there followed not only the trauma of major abdominal surgery on a weakened body - but also infected joints and fissures with severe mobility issues and many years of learning to overcome such stuff with packing fissures to the bone and addressing open wounds to allow draining off of infected fluids - But, on the positive side, also providing natural physical drains too.
There is much that can be said about the esoteric side of life here too - but this site is not the place to voice these: Just know there is much more going on than just the physical manifestation of our conditions.
Our mental state of health is a cruitial element to the mangement or otherwise of our challenges in the varied form they present.
I often wonder - whether I had not delayed for as long as I did, would the outcome have been different - There is no telling for sure - as there is never the opportunity for a 'control' option - but what I will say, is that it is different for every individual - and one has to take calculated odds and spiritual intuition to go for what is right for you: There is little doubt in my mind, that had I not delayed and worked towards a healing rather than cut immediately where high infect was prevalent - then the life would have been shorter and much less fulfilling - notwithstanding the challenges one has inevitably not only riswen to but learned from. In ones quiter momentswe know we are richer for our experience - tough as is is: And generally most of us are glad that we do not suffer from some 'other' condition we have witnessed in otehrs. Dis-ease seems to visted upon those whom not only can bear it but also often can be the richer for their experiences.
So keep on trucking - and remember to celebrate the triumphs - no matter how small - and really blow-out on the big ones: For your life is what you make it - for yourself and those around you - whether close or professionally supportive - all benefit from positive reflective and a genuine sincere feed back. The more informative you can be - for you can know your body best - You are the best at being You - the better others may be able to respond, offer options, try alternatives and in my experience, the more supportive and progressive ones 'treatment' can be.
I know I have banged on some - so forgive the verbosity: I have keyed it in the belief that some one somewhere may feel a comfort from, even a resonance with some elements - I know, had I not been forced to deal with stuff on a lone basis at an early age in mylife - Some of my trauma may have been greatly reduced: You do not have to wear your heart on your sleeve in order to benefit from and contribute to some fellow humanity and caring for the greater good of our fellow folk - as I say eleswhere here, I am intrinsically quite a shy person. Certainly, in many ways, a lone person - not lonely - just lone.
Nowadays I am a pretty fit person - having just beaten a blood cancer senario which had its challenges - some of which are ongoing.
I have been active in business, fullfilled in life, and have much to share - So if I can help anyone who is 'going through the mill' I am pleased to be able to lend a virtual hand: Life can offer amazing opportunities in unlooked for places - one just has to be open and aware to recognise these and not be fearful of trying and responding with positivity.
I am interested in befriending musicians who are switched on and have postive energies and a high level of emotional intellegence. If they have ostomies - then fine - if not - also fine. It is much easier to view the stoma and bag that I wear as a means for life - without which I would not be profiling on the keypad. If one relates with folk either intimately or closely at a soul level the device does not become an issue.
My own comment to newcomers who are coming to terms with their stoma and what this entails for their lifestyle, is be open and frank - folk who are authentic will act accordingly and it is true, that some need educating and some just can not hack any artificial bits on their or your body - it can be the same for anything that is visible for some people - they just feel unesy - and it does not change with experience.
I am in a long term relationship and enjoy a great deal of love and protection from my partner of over 25 years standing, and I feel he knows me better than I do myself at times! My partner is not an ostomist: But accepts me for what I am - a close special Friend.
I have sucessfully co run a professional service business and also done my bit to aid the floatation of a mortage company through a chain of estate agents when I was younger - Most of my professional work had been in field of architecture, property and design - I would now like to find a new gentle energy project to become involved with.
I am Mid-Wales based on the border of Shropshire Herefordshire and Powys.
Nowadays I am quite a shy person although a strong one: I find 'networking' for the sake of remaining connected a chore - but where there is a nieche or need and where like minded folk may 'be' then I am at ease.
If you feel there is a resonance here then feel to share a few words.
I like live music: particularly 12 bar blues, medieval, some jazz and some classical: I find opera a challenge and ballet I have not yet learned to fully appreciate - Rap can be amazingly good - but generally I am not keen, and traditional folk I like in moderation: Many other styles are wonderful in their own right: I have a friend who makes Native American flutes for example. I am not a musician myself but do have drums and rattles.
Good food well presented and country house and gardens design are all my bag particularly when shared with authentic folk.
I am an omnivore, try to be as 'organic' as possible but do not eat junk food. Generally I am fortuneate in that my diet is fairly well open - There was a time when I was very limited to a non diary low residue and at times high residue - right through to only eating 'space food' ie pre-pared deep line stuff fed through a drip, which one never tasted - I tell you is is not fun having no food that one can masticate for 6 month runs! I am particularly pleased to have overcome the need for all my alimimentary tract to be compromised: I do so love, and appreciate, flavour and flavour combinations! If you are are experiencing difficulties in this area, even if you would not otherwise do so, DO be creative in how you prepare and present food - it can make all the difference in just eating one and a half mouthfuls - rather than dimissing the whole thing as beyond a current tolerance. Be kind to yourself - but be proative and take responsibility too!
I am unable to sustain walking far - but do lead an active life in a measured manner - Meaning my energy levels are commensurate with a semi-active 60 year old: But my mind is more akin to a thirties onward-something: Time is but a human construct after all. AND THERE IS ALWAYS A WAY AROUND A SHORTCOMING. So on good days I can match any human being - but am unable to sustain such an endeavour!
I also have to admit I like fast cars too - both classic and modern.
Also, I would never to choose to live without dogs - White boxers: They are creatures unto themselves and great fun .... but be warned, they are the adolescents of the K9 world, loving, energetic and people orientated: And most of them are trainable - just independent souls too!
I think this will give a lead-in to me: Probably written too much .... but hey - Wishing you a good journey along the path of life.
If you have an active mind, kind heart, and are not afraid of being truly authentic to yourself ie you know yourself - or at least have and continue to persue an active course in order to do so, then we may share commonality: I look forward to helping and sharing.
And remember ... Kids come in all ages, shapes and sizes :-)
I will try and remember to log in from time time - Thanks for looking in.
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